This topic contains 29 replies, has 13 voices, and was last updated by 
meganjane 11 years, 6 months ago.
You and your Dad seem to be doing great Guns Daniel, am not sure if I could have done it the way your are doing it at such a young age, well done young Man, and give your dad my regards.
Stay well and strong
Tom "Onwards and Upwards" x
Hey guys, just going to post another update now!
What a 6 weeks it has been. Dad got taken into hospital around 6 weeks ago with pain in his legs and struggled to move them at all thanks to the pain. Having been out for a meal on the thursday night and him being able to walk to/from the car as a passenger, we thought things were on the mend. This wasn't the case. Within a week in hospital, he had lost all movement in his right leg and then the movemnt in the let soon followed. There is still feeling in them but the spine has compressed the spinal cord aswell as a tumour which also caused some damage to it. He came back home on monday and is now wheelchair bound. Dad is in good spirt despite this massive knock back but I just would like to say how great the NHS have been. Having looked after him for all that time in hospital, we now have an electric bed, hoist, wheelchair and 2 commodes at home aswell as everything we need. We have 2 carrers comes 4 times a day which is free until next month or so and then they will charge but he is doing great.
I just need a bit of help, i am finding it quite tough and not showing it at all to be honest. My sister has flown over from Dubai and has been here for a few weeks now but leaves around the 22nd of March. Im worried that although my mum(my parents are separated) will help now and then, that it is just me and him who live here. I just need abit of help/support I think.
Hope your all well,
Daniel
Hi Daniel
Yes you are going to need a lot of surpport ,you are a bit young to be taking all this and even with the best will in the world, it is to much,have you a social worker??? Are you claiming the maximin allowances?… If not see a mac millan nurse,if you ring them up they will visit at home,she should be able to help with forms,it might be worth visiting a hospic as,they have lots going on,and you might be able to get some respite for your dad to give you a break.
I think you need to sit down with your dad and have a good talk about managing the situation,if you have enough money you will be able to pay someone to come in and clean, plus arrange meals for your dad,Daniel you cannot do this on your own,even with the best will in the world,you have your life ahead of you.it is stressful enough for a wife looking after a husband
I have been doing it for 2 years and my husband can walk,just as he is getting better,my health. Has taken a bashing,,in the end the body says it,s enough.
Please make sure you get help and do not refuse anything even if it,s a niebour popping in to talk to you dad,loneliness is a bad thing.you have to look after yourself too.Eve
I am still at sixth form and I am getting a couple of exam results tomorrow and I dont think I will be able to get any allowances as I am in education still and that im only 17. Dad still has around 3/4 months of full pay left at work and then he will retire on ill health I believe. I will give MacMillan a call tomorrow from school, thank you muchly Eve!
Hi Dan,
Good luck with your exam results today!
Your Dad will be entitled to some benefits so please ask the MacMillan people for advise on this. I think you are doing an amazing job coping with your Dad's illness while also going to school and taking exams. You could also call the Myeloma infoline (the number is at the top of this page) to ask any questions you might have, I have found Maggie and Ellen who take the calls to be very kind and helpful when I have questions about my husband's Myeloma.
Keep us posted on your Dad's progress and how you are doing.
Take care,
Megan
Hi Daniel
You have been doing all this while sitting exams!!, Dan you are taking on to much do you intend to do uni???,you do have to gather you're family round and make desist ions ,I am surprised they let your dad out of hospital,without more surpport .
Although you dad is cheerful he must be worried, this problem is not going to go away,it is your dad who can put in for allowances,plus no matter what age you are you are entitled to careers allowance .Dan I am sure your dad would want you to have your own life 17 is a special age the next few years should be years free from problems. Eve
Hi Dan,
You need to speak to a MacMillan nurse regarding putting in a claim for DLA (Disability Living Allowance). DLA is separate to any earnings, pensions or savings etc., and your Dad will most certainly qualify. He will also qualify for the mobility component as well, which means a new car (changed every three years) so if you haven't passed your driving test get ready for lessons. 🙂
Your Dad doesn't need to be able to drive, he can nominate up to 2 drivers to drive for him. If at a future date your Dad is fit to drive he can have the car adapted to suit his needs. This mobility component is a godsend and allows youths freedom to go where and when you want… once you have the car it is your Dads to do what he wants with it, there are no restrictions excepting only the named drivers being allowed to drive it – regardless of the allowances of other drivers – it becomes the family car and you can use it as such. You can also apply for a Blue Badge, which allows you to park in disabled bays which is great for hospital visits etc.
You can have a cash allowance which you can put towards buying a second-hand car but I would recommend the 3 year lease scheme with a wide choice of cars available. If you see a car in the catalogue that you like but is outside the allowance you can pay a premium to get the model you want. For instance I wanted a Ford C-Max with all the whistles and bells and it cost me a premium of £400… but there are literally hundreds of cars with no premium needed… so check it out. 😎
It is in no way a relief from the disease but it makes getting around a trouble free option (Tax and insurance etc are paid for, you only have to pay for petrol/diesel… everything else is governed by the scheme).
Dai.
Hi Dan
Well you are doing a great Job for such a Young man and am sure evry one is proud of the way you cope, but as others have said ask for help and use it you need space and time away from all of this MM stuff every now and then.
Such a lot to do and sitting exams also wow I am proud of you as well 😎 but ask and take the help as much as you can.
Take Care and Good Luck in your exams
Tom Onwards and Upwards
Dan
Your dad must be very proud of you! You are an absolute star, so young and dealing with all this. I am much much older than you, and I have found it tough. Please try to get some help, as you will burn yourself out with exams and everything! And you'd be no use to your dad then ! Get a break too because you can have a bit of a relax and just some time away, you love your dad no less, you just need to recharge batteries 🙂
Don't shoulder all this on your own
Vicki and Colin x
hi dan
just read you blog i can come dawn and stay near and help
you out say three days a month i am haer for you and dad
john
Hi Daniel, I have been reading this thread and just had to say how amazing you are – your dad must be really proud of you. You have both had such a tough time and I can only admire the fact you are dealing with this whilst also keeping your education going. I'm sure this is really important to your dad too.
I wish you all the very best.
VickiS
Ive found sometime to give you all an update! Ill do it in bullet form as theres quite a lot!
-Dad has now finished his Velcade treatment, no side effects at all!
-He is going to the local hospice(rowcroft) for physiotheory 2 times a week, he has a littl ebit of movement back in his legs
-The railway benevolant fund is about to grant him with the money for a brand new electric wheelchair to get around the house and out side alot easier as we live on a hill and the doorways in the house are not wide enough for the wheelchair to get through.
-Me and Dad are going down to Dereford tomorrow for to see Dr.Hunter about another stem cell transplant which will be happening soon while the cancer level is low. Luckily enough, there seems to be enough pre-harvest cells for a straight transplant which is great!
-I have my last day of school on friday and more exams soon to come!
There is however, a couple of things I would like to ask about the second stem cell transplant; How successful is it likely to be? What sort of condition will I see my dad in? (as I was very young for his first one and cant remember)
Many Thanks,
Dan Balsdon,
Torquay
Hi Dan
That's wonderful news,give your self a pat on the back,you are doing wonderful. Please take time for your exams ,they are your future and very important,make sure the appropriate authorities know your problems,it,s important.
There is no magic formula ,the general feeling is your dad should get 1/2 the remission ,but lots of factors come in to play,
Your dads physical fitness plus state of mind,many people have got more time second time round!!!!!.so work on what's possible to day,the fact that they are considering another SCT is good,your dad is getting some movement back in his legs,!!! All good news.
So happy for your dad and you,but you must take time for your life. Eve
Dan
That's wonderful news? Is that derriford in Plymouth? If so we are told that's one of the largest oncology centres in the southwest with a good reputation. You and your dad seem to be doing great. We hope you are feeling ok dan…..I was shattered when colin was going through his treatment and transplant so you must be tired too with exams etc. I know everyone says it but make some time for yourself too 🙂
So pleased for you and your dad
Vicki and Colin xx
Hi Dan,
It is great to read such positive news for you and your Dad. I don't have any experience of a second stem cell transplant but I think Eve is right that the general outcome is approx half the remission time as was achieved from the 1st transplant, as your Dad had quite a long remission the first time this bodes well for the second transplant. I have also read quite a few comments/blogs by people who have said their second transplant was easier than the first. This was partly because they knew what to expect and partly because the anti-sickness medication is used to greater and better effect now than it was even five years ago.
My husband Phil had his stem cell transplant in December and I can tell you from our experience that he felt really rough for about five days while in hospital (he was in for 24 days in total) and then when he got home he was really, really tired for the first month but week by week he regained his strength and started feeling better. Everyone has a different experience but it is doable and if the result is another period of remission it will be worth it.
Good luck to your Dad and good luck to you for your exams.
Megan
The topic ‘Information/Experience on relapse and velcade’ is closed to new replies.
